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A Longitudinal Evaluation of Patients' Perceptions of Parkinson's Disease

^a Physical Therapy Program, University of Colorado Health Sciences Center, Denver, CO
^b Center for the Study of Aging and Human Development, Duke University, and GRECC, Durham Veterans Affairs Medical Center, Fulton Street, Durham, NC
^c Health Policy Research Center, Milano Graduate School, New School University, New York, NY
^d Terry Sanford Institute of Public Policy, Center for Health Policy, Law and Management, Duke University, Durham, NC

Correspondence: Margaret Schenkman, PhD, PT, Physical Therapy Program, University of Colorado Health Sciences Center, Campus Box C-244, 1400 E. Ninth Avenue, Denver, CO 80262-0244. E-mail: margaret.schenkman{at}uchsc.edu.

Decision Editor: Laurence G. Branch, PhD

Purpose: Parkinson's disease (PD) is a chronic progressive neurological disorder that frequently results in nearly total disability. This study examined changes over 3 years in patients' experiences living with PD, and explored how participants' health perceptions and predicted mortality at baseline related to their actual death by Year 3. Design and Methods: Data were obtained from a local sample of 109 participants by in-home interviews. Results: The collected results (1) suggested a disconnection between the participants' responses to open-ended questions about the disorder, compared with their responses to questions structured by the investigators; (2) demonstrated changes in responses to structured and open-ended questions; and (3) demonstrated that respondents who declined to predict whether they would be living in 10 years were three times more likely to die by Year 3 than those who answered the question. Implications: Results demonstrate the importance of identifying the most important issues for the individual with PD and suggest that these issues may change over time. Results also raise issues surrounding how patients' perceptions influence the course of their disease.

Key Words: Parkinson's disease; Patients' perceptions; Predictions of death

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